Tuesday, September 30, 2008

This is our first week of business as usual since the hurricane. Josh went back to work the next week, BubTar started school the following week, and KayTar and I went back yesterday. This morning (a bit too early for my liking) KayTar has her first PT appointment and tomorrow she has an ENT appointment. Then this weekend, she has camp and BubTar has his best friend's party to attend. Strange how you can go from having so much extra time it makes you miserable to absolutely NO extra time, no matter how much you beg for it.

KayTar broke my heart a bit yesterday when I was getting her ready for school. When it was time to put on her glasses and hearing aid she said, "But princesses don't have glasses and ears (hearing aid)!" Oooof, my heart. Poor dearie, it was easier when she didn't notice those things. Of course I told her that princesses can and do wear those things, but at age 3 what mom says doesn't matter nearly as much as what she sees in her Disney Princess book. Damn you Disney and your princesses with 20/20 vision and average hearing thresholds. Heh. I didn't really think we'd be struggling with body image and the media quite this early. Of course, I did some searching around and found one book with a bespectacled princess, but not much else. Why not? Boys with glasses looking for a superhero to adore have both Clark Kent and Peter Parker. Superman AND Spiderman! Girls? Nothing. Not even the bookish Belle wears glasses. There has to be a market here, my three year old cannot be the first child to declare her daily accessories deem her unfit for princessdom. It also reminded me of a couple of years ago when BubTar told a classmate, "I only want friends WITHOUT glasses." I remember crying when he told me that, crying for his poor little classmate and his mom, and for my KayTar who would one day be the kid who looked a little different. At the time she only had her little purple ear, but she's got the glasses, too. Now we've arrived at the day when she realizes it makes her different.

The day got better, though, because after school her teacher told me she pooped on the potty! ON THE POTTY AT SCHOOL! This is the stuff mommybloggers dream of, no? I told her if she can use the potty every day at school, then she can get some fancy new pull-ups (with Dora Who Isn't Deaf or The Princesses of Excellent Eyesight on them, I'm sure) and she hugged me and said, "You LOVE me, Mommy!" and then giggled maniacally. I wouldn't usually think of disposable underpants as a symbol of my love, but there you have it. The three year old mind is highly entertaining.

As further evidence that a three year old mind is highly entertaining, I leave you with a couple of recent quotes from KayTar:

While driving to camp,

"And I will wear a costume and it will be a blue dress and I will be Cinderella Blue and I will be the Highness of Style."

While staying with my parents,

K: I'm going to buy a pink car.

Josh: But where will you get the money?

K: I take it from G's room! She had been snatching change from my mother's bedside table. Sneaky (and honest) little thief.

Sure looks like a princess with glasses and a hearing aid to me, kiddo.

Sunday, September 28, 2008

Last night I still fell asleep thinking about her hearing, about food, about illness, about the Button. So I probably didn't show Anxiety much of anything and KayTar will probably be sick within the week, but it felt good in the moment. We were free! Or we fooled ourselves into believing that at the very least. Either way, it was nice.

We are restarting sign language with KayTar, back to the beginning it seems. Once upon a time, it was her only communication, but her speech really began to emerge after getting her little purple hearing aid. Signing fell by the wayside much like her wee walker had, a crutch she no longer needed. Here we are again, though, feeling the the beginnings of a communication struggle. Our words are not always reaching her ears with the meaning still attached, so the hope is that sign in conjunction with speech will alleviate some of the confusion. The hope that this is all an imagined response to an incorrect hearing test is still trying to keep its head above water for appearance's sake, but I don't think it can keep it up for too long. We got her new hearing aid mold this week and it isn't fitting quite right, which causes copious squealing. It is loud and annoying and we ALL hear it. Except, well, she doesn't. It is squealing directly into her ear and there is no response from her. She used to tell us, "My ear is squealing!" or pull it out when that happened, but now, nothing. Just one more weight dragging that sad little hope underneath the waves. In the end, it can't hurt to reintroduce signing, but if we don't and the loss progresses? Well, we'd just prefer to work on it now rather than later.

At the museum, she spent quite a bit of time in the little mock-up grocery store...mostly counting things and reading the signs and labels. I looked around the store and realized, she eats absolutely nothing they sell. Nothing. A grocery store geared to children and she eats not a single thing that is sold there. Ice cream was an almost, but they didn't have vanilla which is OF COURSE the only acceptable flavor. At dinner, though, she ate part of a bread stick and dipped it in alfredo sauce, which was HUGE! She hates cheese, so dipping her bread into a cheese sauce was like a miracle. She also ate a few croutons and a small bite of my mom's birthday cake without vomiting. An offer of a second bite was met with locked lips and a stern head shake, but she ate a bite of CAKE with ICING on it! It was a bit of a miracle, really.

When I step back from the whole g-button thing, quiet my emotions and look at the facts, I know it is the right thing. It isn't taking anything away from her, she'll still be free to eat and drink what and when she wants, but it is giving her an advantage she doesn't have right now. The freedom of nutrition and hydration that isn't a chore. It will do for her nutrition what sign language will do for her communication, it will give her options, insurance. I know that is the truth of it, but the moments where I can disconnect my emotional response long enough to really believe it are still a bit farther apart than I'd like them to be. In between those moments of clarity, I question whether we are doing it for her or for us, whether we are making our lives easier or hers. I wonder if we are trading in the problems we know for unknowns, swapping things like strep and dehydration for site infections and granulation tissue. On this side of the surgery, even though we've made the best decision possible, it still feels like a bit of a gamble. Hopefully once we get to the other side of the surgery, it will just feel like relief, coupled with wondering why we waited so long to go through with it in the first place.

Thursday, September 25, 2008

About a month ago (wow, a month? It doesn't feel like a month), I mentioned that the feeding tube was firmly on the table again. Since then, her eating habits have gone from Barely Enough to Most Definitely Not Enough. She has been sick almost without a break since school began and it makes her Most Definitely Not Enough status morph into Should We Just Pack Our Hospital Bag Now? status. I've been experiencing varying levels of anxiety about her intake and general health for a couple months now and although there are times when the anxiety almost dissipates, another illness or other obstacle is waiting in the wings and takes center stage before I ever get to experience that great big sigh of relief. During our last pediatrician's visit while we were going over a list of various KayTar-related items, she said, "Do you want the surgeon's number?" I eloquently stuttered something to the effect of "Yeah. Okay. Sure." and called as soon as I got home, lest I lose my nerve. To my surprise, because this NEVER happens, the scheduler said, "He can see you next week." So I once again eloquently said something like, "Yeah. Okay. Sure. That will be fine." and shakily wrote it in my calendar before I lost my nerve.

The appointment was last Thursday and it went well enough. I think I expected some sort of conversation about whether this was really the right thing for her (which I was internally agonizing over), but there wasn't and that in itself kind of made me feel better. Looking at it as something to be done, rather than an agonizing decision to be made was a relief. He was kind and honest, which I find to be admirable qualities in most people, especially people who will be cutting my child open. He was honest about the procedures and risks, which I was already familiar with from my own reading and surgical video watching, and he didn't make it seem like a huge deal, which was also a bit of a relief. Next week she has a tonsillectomy consult with her ENT and then their schedulers will have a chat and get a date on the calendar for both surgeries during her winter break. We're doing a two for one sort of deal, trading in the tonsils for a tube in hopes of cutting down on infections and improving her intake all at once. It is what every three year old wants for Christmas, I'm sure!

Internally, I'm still torturing myself a bit with the decision. Logically, I see it as the best thing for her or else we wouldn't be pursuing it. Josh and I both agree on it and he isn't really a medical intervention kind of guy, so that in itself is reassuring for me. Emotionally, though, I still have doubts that resurface periodically. This evacuation has been really good for her, which just encourages the little doubts to speak up a little more. She's been drinking 2-3 Pediasures per day again. She is finally healthy (KNOCK, KNOCK, KNOCK on wood). She has been snacking more often (on chips and bacon mostly, sigh). Logically, I know this is because we have been effectively under house arrest and there has been nothing to distract her from the work of drinking and eating and she hasn't been exposed to any germs outside of the home either, and we can't live our lives like that indefinitely. We can't keep her home from school or therapy or camp or fun or LIFE just so she has time to drink her bottle or avoid illness. It isn't a worthwhile trade for her. She loves school and therapy and all of the fun stuff her days are typically full of. To achieve this brief period of eating and drinking like she was 6 months ago, we've basically cut everything else out of her days. She shouldn't have to devote her 12 waking hours each day to receiving minimally adequate nutrition. We shouldn't have to pass on trips to the museum or the park or the zoo for fear of what little pathogens she will bring home as souvenirs and what it will do to her intake. But we do. We think about these things now, daily. They factor into the decisions we make for her every single day. And these big surgical decisions we've made recently, although they feel enormous and frightening at times, can change that. These surgeries will help her be healthier, they will help her get adequate nutrition without it being a chore for her. She can live her life fully, and whether or not that includes 3 bottles or not, we can make up the difference for her. When she does get sick and her oral defensiveness kicks into hyperdrive or she feels too poorly to drink, we can make up the difference. The g-button won't change her bizarre relationship with food and drink, but it will give us the ability to carry her through it when she can't or won't do it herself. I believe--we believe--that ultimately it is the right decision for her, but sometimes I really have to work to remind myself of that. In roughly three months, my little girl will have a wee plastic button on her belly and we fervently hope her quality of life will have improved exponentially for it.

Wednesday, September 24, 2008

KayTar's repeat hearing test is in a couple of hours. She's had a handful of them and while they've always been torturous due to her passionate disagreement with the sedative of choice, I've never been particularly anxious about them. I dread them, because KayTar is a belligerent little drunkard who won't politely pass out when drugged, but I don't fear them really. This time, the hardened knots in my stomach tell me things are different.

According to the last test, her hearing in her left ear has gone from a moderate to severe slope, to a profound to severe rise. Basically, it means that the sounds she used to be able to hear moderately, she no longer hears...not even with the aid of an aid. Before that test, I was partially expecting a change in her hearing...she has been missing sounds and getting confused by our speech lately and I felt like maybe something had changed. When the audiologist said there was a decrease, I nodded. "That's what I thought." I said. Then I asked, "How big of a decrease?" She said "30-40 decibels." That is when my stomach dropped a little. When I got the paperwork that said, "Profound." it dropped a bit more. Hearing impairment that can be scaffolded by a hearing aid is one thing, but hearing impairment that we can't somehow fix? That feels like something else entirely. Hearing loss that is still progressing? That feels like something else, too. It is scary to be faced with the reality that whatever has done this to her might not be done yet. Solid ground beneath our feet that has suddenly vanished.

Since the test, we've noticed her missing more speech sounds and seen various other little red flags that accompany hearing loss. Today, as much as I hope to hear it was all an error, I don't really believe it was. I expect to leave the office today with the same news as I did last time, with a belly full of lead and a mind full of questions that I can't answer for myself.

****

Today was a bit of a waste of time. We had to wait an extra long time to be seen (totally understandable as we've been the patient causing the hold up MANY times in there), so it was an extended waste of time. You see, KayTar wasn't really interested in the little testing game today and the audiologist wasn't really interested in trying to engage her in the little listening game. She wasn't defiant or cranky, she just wasn't really tuned in to the task at hand. So they gave up. QUICKLY. Too quickly for my liking actually. The audiologist did not adjust KayTar's hearing aid (which isn't a huge deal because if it has progressed to that level, the hearing aid won't help anymore) and she said we can try again in 3 months. BAH! (digression: my heart just temporarily stopped when I realized in roughly 3 months my little darling will have a feeding tube. Makes 3 months seem like no time at all, really. EEK!)

Rather than wait 3 months to repeat the exact same thing we did today, when we see her ENT next week for the tonsillectomy consult, I'll try to schedule a hearing test with his office (rather than the hospital) and also get her on the list for a sedated ABR with anesthesia (rather than chloral hydrate). I can ask him all the super fun questions regarding prognosis and treatment that are bouncing around in my head, too. Then we'll go from there. Of course, I'd prefer to have gotten a LITTLE information today, but this will work just as well, I suppose.

Tuesday, September 23, 2008

After 13 days, we are in our home again. With electricity. And cable. And internet connectivity. It is heavenly.

I have lots to write about. There are thoughts that have been trying to claw their way out of my brain for almost two weeks now, keeping me up at night while I turn them over in my mind. Writing--BLOGGING--has become such an important coping mechanism and processing tool for me, suddenly being without it at a time like this was strange. There is, of course, KayTar's progressive hearing loss and what that entails, as well as the decisions being made about surgeries and such, and I haven't had the time or space to really think it through. Unfortunately, tonight I don't have the energy or mental reserves to write anything of note. Tomorrow, she has a repeat hearing test to confirm the additional loss. I'm sure I'll have much more to say after that is said and done.

Wednesday, September 17, 2008

We're okay! We are staying at my parents' house, and although the quarters are close (11-13 people have been staying here), we have power, water, and food.

Our house is mostly fine. The fence was destroyed. BubTar's window was broken and let in water, causing mildew and water damage. We have a tree uprooted and lying on the powerline. The trampoline net was ripped off and the trampoline itself is a little worse for wear. But all in all, not too bad.

Tomorrow is KayTar's surgical consult for the g-tube. I'd talk more about it, but I don't have the time.

I got the offical paperwork from her hearing test yesterday. Profound loss.

So much to say, so little privacy and Internet time. Just wanted to hop on and say we're doing just fine, minus Internet withdrawal and being completely stir crazy.

Friday, September 12, 2008

Still sickShared couch bed with meTalked in her sleepBroke out in a rashThrilled to be staying in the hotelBubTar:

Dying of boredomBouncing off the wallsSwam in the pool last nightSlept on air mattress, which is VERY excitingGlad to be in the hotel when NOT in the room itself

Josh:

Watching the newsSlept on couch cushions on the floorEntirely calm

Me:

Should be studyingShared couch bed with KayTar who talked in her sleep LOUDLYAnxious because we don't have quite enough of KayTar's meds and there are no local compounding pharmacies where we are. Because a few of my friends have homes in places that are likely to be hit and hit hard, possibly losing it all this weekend. Because we don't have flood insurance on the house. Because we might be without power at home for a while. Because I don't know what home will look like when the wind and water are done with it. Because the last time a hurricane like this hit was the year I was born and I have no idea what I should expect.

Regardless of all of those worries, all of the important things are here with me, safe in this hotel room, and at the end of the day that really is enough.

Photos from our last stay away from home, under much more pleasant circumstances

Update: The hotel told us to fill the tub with water in case the water is shut off. We will likely lose power tonight, too, so there might not be updates for a bit! THIS IS SO FUN! (not.not.not.)

Thursday, September 11, 2008

We aren't sure if we're evacuating. It isn't mandatory for us right now. We're currently waiting on Josh's employer to make some decisions, then we get to play the "Should I stay or should I go now?" game. I'll try and keep you guys posted.

UPDATE: We're leaving! Not going far, but hopefully far enough!

UPDATED AGAIN: We're here! We are staying at a hotel that should keep us clear of the major activity. It was a much more pleasant evacuation than when we did this in 2005!

And yeah, KayTar is still sick. There have been 11 days of school this year and been absent for 7 of them. She has been absent 64% of the time. Sheesh.

Monday, September 08, 2008

BubTar seems to be coming down with something again! If you're keeping track, that makes 1 week of healthiness for every 2 weeks of illness so far.

Week 1:BubTar is absent for 1 day, but is sick through the weekend.

Week 2:KayTar is absent for 4 days.

Week 3:KayTar is absent for 1 day, not due to illness. It would have been 2 if Monday wasn't a holiday, though.

Hopefully it will be nothing. A cold, perhaps. A nice, soothing, run of the mill cold. Half of me thinks (read as: hopes) that will be the case. The other half is wondering if we should go ahead and start a pool for the next round of "Will My Child Urinate Today?" It also makes my insides buzz with a low level of anxiety, because truth be told, KayTar's intake is still way down and another hit of illness will flush it right down the toilet. Ah yes, all it takes is a runny nose to strike fear into my heart. I am so brave.

(side note: This weekend I was watching House and doing laundry. KayTar came in the room and was watching at it while chatting me up about something, presumably the fact that she really wants a WordGirl costume. There was a patient in a hospital bed thrashing about because she didn't want her blood drawn or something to that affect and KayTar said, "Oh, she is VERY brave. I am not brave anymore. I'm feeling BETTER! I don't need to go to the hospital anymore." Yes, my child thinks that brave and sick are synonyms because she only hears brave in terms of tests and trips to the hospital. Lovely.)

Anyway, back to my phobia of runny noses and KayTar's intake. Before she started school, when she was healthy, her intake looked like this:

Breakfast:1 Pediasure

Lunch:1 Pediasure or 8 oz of milkpossibly 1-2 baby foods

Dinner:1-2 baby foodssometimes a snack

Bedtime:1 Pediasure

Even if she only had her Pediasures, that was roughly 700 calories. If it was a really good day and she ate everything, maybe she would hit 900 or 1000.

Now that she is in school, her intake looks like this:

Breakfast:1/2 Pediasure

Lunch @ school:1 serving of Pringles

Snack:1/2 Pediasure

Dinner:possibly 1-2 baby foods

If she only has the Pediasure, that is 237 calories. Add in the chips, that is 377. Plus the baby food if she eats it, add maybe another 100, so roughly 477 calories. 477! And 8 ounces of fluid? It isn't enough.

Part of the problem is that she is in school when she was previously napping. Naptime was when she had her lunchtime bottle. The other part of the problem is that now that she doesn't nap, she is too tired for her bedtime bottle. She just falls straight to sleep as soon as her head hits the pillow. While it has solved the problem of KayTar the Night Owl, who used to stay up with us until midnight, it has definitely created another problem with her nutrition. Consequently, because she is only getting 1 bottle of Pediasure per day, she is also only getting 1 dose of her Miralax per day. This weekend we came very close to having another fecal midwifery situation on our hands and those just are not pleasant for anyone.

So, BubTar is a little tiny bit sick, so little that I didn't even contemplate keeping him home, but here I am fighting the urge to pack our hospital bag already. Her intake is just so poor on a "good" day (yes, the so-called good deserves some air quotes, I think), even a slight infectious breeze is enough to do her in. We're still only getting 1 or 2 wet diapers from her a day and she is HEALTHY. Add in a little illness involving a sore throat or enough drainage to make her feel nauseous and there you have it, the scales have been tipped in an unfavorable direction. Ta-DA!

Usually I do some sort of wrappy-uppy thing at the end of these kind of posts, but I accidentally hit the publish button a second ago and now there is a timer in my head counting down exactly how long it takes someone to click over from their Reader to find this post in all of it's unfinished glory.(Is there some way to retrieve a post once you hit publish? This might be good to know.) The blinking numbers in my mind make it hard to come up with some sort of witty or intelligent summary sentence, so instead, LOOK! A REALLY CUTE KID!

PS: She's totally faking. Someone probably just said, "KayTar! Time to eat!" She's clever, but we're on to her.

Friday, September 05, 2008

Yesterday was decidedly unpleasant for me, it was as if my emotions decided to take up residence right on top of my normally tough skin. Everything rubbed me raw, things that wouldn't even register on a normal day. I invited my friend Melon Collie over and we decided to throw ourselves a little party. We even had live music, The World's Tiniest Violins. They rocked the house. You should have been there!

KayTar had her hearing test on Wednesday and the audiologist noted about 30-40 decibels of additional loss in her impaired ear. She wants to repeat the test in the next couple of weeks to verify the results, but even without verification, it was enough to knock me off balance. She has these periodic tests to watch for progressive loss, but we never expected it to happen. Well, it seems to have happened, and once again it made me acutely aware of how little we know about KayTar's condition and future, and reminded me that we have no control over the outcomes. I've written a lot lately about accepting these unknowns, but I think what made that so easy to accept was believing the most difficult times were behind us. This little hearing test made me realize that maybe that isn't the case and I have no real way of knowing. It hasn't exactly been easy around here lately at the Depress-o-Blog; the illnesses, the dehydration, the episodes, the surgery talk, and now progressive hearing loss. We really don't know anything about tomorrow, we only know what we know today. Most of the time that is enough, but yesterday it simply wasn't.

So, while Melon Collie and I were rocking out to the World's Tiniest Violins, I indulged myself with a little game of What If, the goal of which is, of course, to make yourself cry. I won, in case you're wondering. Soon enough it was time for me to go to school, so I left Melon Collie here, and drove to school with the haunting rock ballads of the World's Tiniest Violins still playing in my mind. By the time we were dissecting our cats (sorry, Peanut!) I had forgotten the tune altogether. It seems to be impossible to feel sorry for yourself when dissecting a cat, I mean, whatever is going on in your life, you're still better off than the cat, right? It isn't enough that the poor thing is dead, it is also being cut to pieces by novices. What is a little progressive hearing loss when you are facing students with scalpels, really? It is all about perspective.

Today my feelings seem to be tucked back inside of my body where they belong and my rational disposition has promptly returned. My friend Logic is on his way over and we are going to read textbooks and case studies together and I won't be answering any of Melon Collie's phone calls or text messages today. I contemplated not mentioning Melon Collie at all, because he is one of those second or third string friends, the kind you aren't all that proud to be acquainted with in the first place, but I try to be honest here, even if this IS becoming the Depress-o-Blog. If I showed up today with Logic and didn't mention the big self-pitying bash I threw yesterday, well, that wouldn't be the whole story. Yesterday was difficult and I was sad. I cried! I can't remember the last time I cried about any of this...probably last year after that whole We Have a Diagnosis/No We Don't fiasco. It happens, every once in a while life gets just a little too heavy and you have to lighten the load. Then life goes on, just like it always does.

Monday, September 01, 2008

Earlier today I took KayTar to the hospital to get a chemistry panel done. She's still flirting with dehydration and after so many days, her pediatrician wanted to be sure her kidneys were faring well. Long story short, her labs look good! YAY! Of course, there is longer version of the story, a nice little tale about uncooperative lab workers who did their best to avoid collecting KayTar's blood, but I'll spare you. Eventually, they conceded defeat, KayTar got her finger stick, and we went on our merry way. KayTar said, "That wasn't so bad! This is a GREAT DAY!" and cracked my heart just a little, because in the realm of her experience, a little finger stick and subsequent bloodletting equals a great day.

A couple hours after we got home, an episode came and washed her away, just like they always do. As if one moment she is lying on a beach, happy and whole, completely herself, and then the tide begins to come in and pulls pieces of her out to sea, dragging her beneath the water bit by bit. Josh and I stand on the beach staring at her intently, surveying what is left of her there on the sand, not quite able to trust our eyes. We ask each other, "Does she seem to be getting smaller? Does it look like she's being carried out to sea?" We stand and watch as more and more of our girl disappears, until we realize that it really is happening. By the time we see the truth of it, our little girl has been pulled under the waves of the suddenly turbulent sea. Her joyful face was suddenly blank. Her bright, smiling eyes were dark and closed. Her giggles and songs had turned to groans and mumbles. It happens like this every time, and yet, we are still surprised. We still can't quite believe our eyes. We still ask each other, "Is this it? Is she having one?" We volley it back and forth for a while, neither of us eager to be the one who finally confirms it, the one who calls it into being. We already know, of course, we just wish so fervently to be wrong, maybe just once. Even before I'm ready to admit to what is happening, my heart starts to race and my stomach drops. I suck in my breath and collect the medications. I give them. We tuck her in. We clean her vomit. We try to soothe her. And then we wait with our hearts in our throats, because that is all that is left to do.

On nights like tonight, she springs back to life in a few hours. She calls out, "I'm not sick anymore!" from her bed and we race in to see her, happy and whole again, but perhaps a little worse for wear. She says, "Carry me, Mommy. Carry me to my chair." And I do. I smile at her and touch her face and kiss her forehead and say, "I'm so happy you're not sick anymore!" She laughs because I'm smiling and says, "You so silly, Mommy!" and she giggles her sweet, sweet giggle. For a while she continues to spontaneously exclaim, "I'm not sick anymore. I not feel sick anymore!" Maybe she doesn't quite believe it yet, and we don't quite believe it either, really. We watch her diligently for the next few hours, afraid that if we look away she'll disappear again. Soon enough she seems to forget she was ever sick at all. She's laughing and dancing and playing again, telling us, "That wasn't so bad! This is a GREAT DAY!" And regardless of the day we've had, in that moment, watching my golden-haired girl smile and giggle again, I can't help but believe her.